Still searching for a diagnosis...
I started this journey in 2010 in my early 20s, when I noticed that I was having involuntary hand movements and numbness/tingling. Didn't take the visual disturbances as a symptom until the first neurologist asked about it. I had an MRI without contrast in 2010, nothing abnormal to note but no follow up with contrast. The doctor said he suspected early stage MS but without any evidence on my tests his recommendation was to follow up if I noticed any new or worsening symptoms. How vague.
Fast forward to December 2023. Suddenly hit with this feeling in my legs, like I was on a rocking boat or trying to walk down the aisle on a plane in turbulence. And it didn't go away. Since then, more and more symptoms are emerging, and looking back I recognize so many signs that I missed.
Now I'm waiting for my MRI, of course they are so booked that the first available appointment was three months out, and I have one month to go. It's frustrating. And I really want someone that I can talk to. I don't want to burden the people in my life without having an answer, and I feel lost at sea. My current neurologist said he suspects migraine disorder, without me experiencing migraine, headaches, auras, or any of the other classic symptoms other than visual issues.
I feel like I'm just venting at this point, but it's so important to have a safe place to share and speak freely about our experiences.
Hopefully the MRI next month will help give some definitive information. All I can do is keep recording my experiences and stay positive.
Well you are certainly in the right place so vent away! We totally understand the many emotions you're experiencing right now. The process of getting a diagnosis can be frustrating to say the least and become tiresome. But you are doing everything you can to get you one step closer and that's what's most important. Continue to journal your symptoms and experiences and keep your head up. Staying positive will carry you through this journey. Soon you will have the answers to get you on the right path to relief. Control the controllable and allow everything else to be. We will figure this out together. Your in my thoughts, Latoya (Team Member) thank you for your kind words. Ever since my last bought of symptoms, which have been a real doozy and very persistent, I've realized that I need to give myself grace. That I need to forgive myself when I miss my goal or fall short with my tasks or the people I care about. That's honestly the hardest part. Trying to grant myself the permission to slow down, or postpone a responsibility.
I started listing my symptoms at the beginning of my journal, and have filled two pages and started a third. And I read what other people are going through and all I want to do is try to give back to the world at large. Try to create some kind of beauty or compassion in the uncertainty of what is to come.
30 days to go before my MRI, and then hopefully my doctor will see what I see and I won't have to fight to advocate for myself. I appreciate that I can be a part of this community despite my lack of answers. I appreciate everyone here, and have spent the whole weekend reading through the various posts and comments. Much love to all!I am getting in my own head something awful right now. I have 18 days to my MRI and keep imagining the various scenarios that could occur. From actually getting a diagnosis to being written off. It's wracking me with anxiety (which of course makes my symptoms even worse!) and I'm losing sleep over it all. I burst into tears today for no reason at all, I wasn't even sad until I was. So I'm trying to find the silver lining, something to take away. And I come to this: my life has touched so many people, I have had amazing experiences and known wonderful people, and I have found a partner that knows and understands me and truly loves me, even if I am broken. I will take all of my blessings and lean on them to get me through what I am feeling right now. Much love to you all!
I truly hope you find peace and assurance in this! Those are blessings that will carry you greatly over the next few days! We're rooting for you. Much love back to you! -Latoya (Team Member)
My anxiety is causing all of my symptoms to be worse daily. I'm not loving it. But I am wondering, can anyone tell me (on average) how long it takes for the MRI results? And how are the results conveyed? Just an update on my chart to read, a phone call, a request for a follow up appointment?
I'm giving myself grace and allowing myself to fall short without calling myself a failure. I've started singing horribly at the top of my lungs in the car so no one has to hear to let out the emotion without crying.
Much love and respect to all!
I wish I had an answer for you! I know each doctor can be different with how they deliver their results. I hope other community members chime in on their experiences if that will help ease your mind. I know how anxious you must be feeling and just wanted to send some thoughts your way.
I am glad you have been keeping a journal and know sometimes it helps to get it out and also giving yourself grace. I hope the wait isn't too much longer and please reach out if you need anything, even if its just to vent! Warmly, Erin T. (team member)
waiting for test results can be hard. It can be easy for your mind to get the best of you during that time. I'm so glad that you reached out to us here, because connected with other during the waiting can be really helpful. And we're certainly a group of people who get it. Each of our experiences is unique to us but we are never alone in it. So, please stay connected here, and post as often as you need and/or want. We're here for you!
To answer your question about the timeframe, I think each healthcare system is slightly different. I know some of my doctors post my results as soon as they're available (within a couple days), while others don't post them to the portal until they've reviewed them and spoke with me directly about the results. I think the most important thing to know is that the length of time that they take to share the results - no matter how short or long - is not a reflection of the outcome of your test. So if it's taking longer than you expected, it doesn't mean that something is wrong. It could just mean that the doctor's office is slower (or more thorough) with their response time.
I would encourage you to find something that will help to make the waiting a little easier on you. As I said, staying connected here is definitely good. Is there anything else that helps to ease your feelings of anxiousness? I know for me going for a walk or just being outside is really helpful. It doesn't take the worry away but it makes the waiting a little more tolerable. That's what I'm hoping for you - that you're able to find some way to "exhale" in the waiting.
I certainly hope that something I've shared here has helped! I'm thinking of you and hoping that you get answers soon and find some peace in the interim.
Best
Alene, Moderator
